Needles and bins

Friday 20th November.

Update by Dean, Amanda's husband.

So now that the flowers, chocolates, 'celebrations of life' events have passed (that isn't a plea for more flowers and chocolates by the way....), I thought I'd type up a few words on our day-to-day life right now.

So how is Amanda, first of all?

Well, it's been just over 4 weeks since we find out Amanda's condition is now terminal. Here's the blog post I penned back on 22nd October if you need a reminder. http://ukbreastcancertips.blogspot.co.uk/2015/10/knocking-on-heavens-door.html

Surprisingly, Amanda is actually slightly better now than she was that day. Admittedly, we're a month closer to the end of her journey, but then again, doesn't that apply to us all? Around the time we were told the news, Amanda wasn't on her Dexamethazone, which is controlling the swelling to her brain and she was feeling particularly bad. The reintroduction of this steroid, although not ideal, has kick started her metabolism again and she's been able to participate in lots and lots of social appointments - she wouldn't have it any other way.

The daily routine is what we think may be similar to parents looking after their children in many respects. When she wakes in the morning, I make her some breakfast, which involves a perilous trip to the kitchen and familiarising myself with previously unknown kitchen equipment, such as these things called "knives", "forks" "spoons" "dishes" and..would you believe..."food". A marvellous creation.

There then comes the first part of her medication intake for the day. Currently this consists of 5 tablets, including the Dexamethazone, the anti-sickness drug "Cyclazine" and Kepra, which was introduced into Amanda's daily drug regime back in August when she started to experience seizures when in hospital. She needs these permanently now. After these 5 tablets, there's the main course, albeit main course is normally something to enjoy. This is far from enjoyable though as I have to inject Amanda with the blood thinning medication called Daltaparin. This is a requirement since Amanda was hospitalised back in mid-October with, what it turns out to be, two blot clots on her lungs. A reminder about that episode here: http://ukbreastcancertips.blogspot.co.uk/2015/10/home-again.html

So while the injections were performed by the fabulous district nurse team on home visits for a while after discharge from hospital, there comes a time - just like a diabetic - where you have to self-administer. This involves a daily injection to the abdomen area either side of the stomach. Pinch the skin, insert the needle ("You'll feel a sharp scratch"...which when translated into what it really means...actually means "this is going to cause you more discomfort of stubbing your little toe by the edge of the bed, or worse still, standing on discarded Lego bricks"), inject the fluid to to its blood-thinning trickery, and withdraw the needle. You even get to pick up your own "sharps disposal" box for discarding the used needle safely. Wonder what the neighbours think as we have our sharps box on proud display on our living room window ledge.

So after the hectic morning schedule, it's fairly straight forward for the rest of the day.
There's currently one further anti-sickness at lunchtime, a combo of anti-sickness and anti-seizure late afternoon and one final tablet in the evening of Haliperidol. While the main reason for taking this one is to block off certain chemicals in the brain, Amanda's friends will be entertained to hear that this particular drug can also be used to control symptoms associated with Tourette disorder, something that Amanda has had difficulties managing since she was a child....said no one ever.

The rest of the day for Amanda is spent either catching up on Judge Judy, catching up with friends or resting. I pretty much have to follow her round everywhere as her memory isn't as razor sharp as it once was. I manage Amanda's social calendar with strict, military precision and have to repeat her daily itinerary to her several times a day as her ability to logically schedule things and recall details is impacted now. I send her text messages, Facebook Messages on demand. I make the bed in the morning, I'll help her open post, especially the never ending stream of gifts we're getting. I'll sort out tidying, cleaning wherever I can too. I'll drive her to/from appointments. There's lots to do on a daily basis before I've even done the usual stuff, wash/dry dishes, washing, cleaning, putting the bins out etc etc etc. We still have time to laugh throughout the day. You must ALWAYS make the time for that.

I'm not known for my legendary powers of patience, but along this journey, there's become a requirement to not get irritated at repeating things over and over. There's a certain sadness and inevitability that this condition is chipping away at Amanda gradually. Chillingly, the eventual outcome to all this is never far from my mind.

So earlier, i touched on how Amanda is generally. She's well. there's times when she'll be talking then will completely forget what she was talking about. A little push in the direction of the last moments of her conversation before she forgot is usually enough to steer her back on track. She has involuntary spasms with her hands which are more noticeable than before. It painful reminds me of my dad and his ongoing battle with Parkinson's Disease. Amanda is able to walk short distances. We're not talking the ability to walk a couple of miles around our local lake any more, but a 800 yard round journey to our local garden centre estate is enough right now.

We're heading away for a week this weekend. Complete with enough medical supplies to keep aa small country afloat for a week. Swimming costumes at the ready too - as all places we're staying have access to indoor spa facilities, just the thing required with the forecast weather in the UK over the next few days. We're very much looking forward to a bit of down time, quality time with each other.

Hope you've enjoyed the insight.